AIBU to be this upset about developmental delay diagnosis

[LadyDowagerHatt]

DD is 2 next month and not walking yet, doesn't really have any words and drools constantly. She is a happy, lovely little thing who smiles a lot, gives kisses, and is making progress, just slowly.

We were referred to the paediatrician, originally for the lack of walking but as we have been waiting so long for the appointment the lack of speech began to become more of an issue.

She has been referred for all manner of blood tests, MRI scan, physio, eye tests as well as the hearing test and SALT referral I already had in place. The paed said she is about 8 months behind and she may catch up but she may always be behind and may fall further behind her peers.

He has not told us anything we didn't know but the news seems to have hit me hard. I think it is the acknowledgement that she does have some issues and all I can do is think the worse that she won't catch up and life will always be a huge struggle for her. In my head I have re-written her future in one day. The paed told us not to think about where she might be in 2 years etc but just to concentrate on her now, which I'll admit I am finding difficult to do. I love her to bits and will obviously support her and push for her to develop to the best of her potential but I feel so upset at the moment. My husband doesn't really understand my reaction and came out of the appointment really positive, thinking at least he didn't identify anything particular straight away - he kept saying at least she isn't been sent for a hip operation of anything which to me would have been preferable as it is something immediately fixable. He keeps focussing on the part around her possibly catching up whereas I am thinking worst case for her development and doubting that is even possible now. I wish I could shake this feeling as I feel like I am letting her down and I am writing her off developmentally - I've already looked up schools with special needs facilities near us.

I think it is the not knowing that is so difficult and I am just filling in the blanks and constantly googling. I know I should be thankful that I still have the same beautiful happy little girl I have always had but I can't stop crying.

Thanks for reading if you got this far!

Big hugs to you, I've been there. And our end result is not the happy ending I wanted. But, it is the new normal... And it is actually really great. Never despair!

YANBU...
My child had a rare condition which basically meant he didn't develop for the first seven months of his life, until he had had two operations. The hardest thing was that he never smiled at me - I used to think he didn't like me! He couldn't even roll over until he was nearly 18 months. From the age of about six months he had all kinds of intervention: portage (really supportive, as insanityscatching says, do get a referral to that), SLT (not much use imho), physio (supportive, although didn't seem to make much difference), music therapy (am all in favour of music but never saw the point of MT) and OT (reasonably useful).

Anyway, last year when he was about 19 months, the hospital evaluated him (yet again) and said he had global developmental delay and needed a whole bunch of blood tests to find out what was "wrong" with him (aside from the physical condition we already knew about). I hit the roof and refused the tests, which didn't go down well with the HCPs. It seemed to me he was behind his peers, but following the operations, he was gradually making progress, but at his own pace. I understand why they like early intervention but I just think 2 is too young to announce that children are globally developmentally delayed and 'something must be wrong'.

After a lot of HCP fuss, it was agreed to reevaluate him in six months time. And in the meantime, he was moved up from the baby room at his nursery to the toddler/pre-school room. Hanging out with older kids made all the difference. He went from a child who couldn't even say mama, to a child who can use the past tense, in the space of about four months. We were due to start another block of SLT sessions two weeks ago, but on our first one, the new SLT person said she didn't really think he needed any!! I reckon he will be discharged from physio and portage too in the next couple of months. The HCPs have gone very quiet on the blood tests...

I suppose the point of all this is to say,
a) 23 months is way too early to say how things will turn out, or to get despondent. The key thing is that your daughter IS making progress. One of the useful things portage taught me is to never compare your child with other children, but instead to compare what s/he they can do this week with what s/he was doing last week.
b) have an open mind about intervention, but don't let it take over your life, and if it all gets too much, put your foot down and say so
c) trust your instinct - you know your child way better than a random HCP with a clipboard ever will
d) children do things with their peers that they will never do with their parents (or HCPs)!

Thanks all for your messages, I really appreciate them and it has helped so much.

Vjg13 - love what you said about your daughter and the way she has made you a better person and parent, she sounds brilliant. It has helped to make me realise that if my lovely DD doesn't catch up things will still turn out to be wonderful, just in a different way to how I expected.

Springtimemama - I've ordered the book, has been thinking about it, now done!

Bakingtins - I know what you mean, nothing seems to move fast in this process. Sorry to hear about your DD, you sound like a fantastic mum and I'm sure you will help her reach her full potential, whatever that may be. At a year 4 months behind doesn't sound like much of a delay - I'm sure the range of 'normal' development from child to child must be around that anyway if not more.

Sandy'smam - I know what you mean. All we want for our children is for them to be happy, who is to say what form that happiness will take.

Cestlavie - MRI is in 6 months time. Nothing seems to move fast in this process!

Countrymummy1 - thanks, I will ask about that. She isn't a noisy sleeper, she does mouth breathe a little though so definitely something to investigate.

Loombands - thanks for your post, as I said above I am feeling more positive that if she doesn't catch up the journey that will take us on as a family can be wonderful and positive in different ways, your post has helped me to see that.

Stickystick - wow what a story sounds like a proper rollercoaster for you with your DS' condition. So pleased to hear he has made such great progress, just amazing. Thanks for the tips. I have contacted portage but the one I found is not in the LA I live in (it is in the next LA, I didn't realise) so she has referred me back to my LA which unfortunately doesn't have portage, it has some early years intervention support instead. I am
not sure if it is the same thing under a different name or if I am missing out on some services because of where we live - this is all so new and confusing my head is in a bit of a soon with if all!

Also just wanted to share, another day of a little bit of progress - a definite 'bye bye dada' when DH left for work this morning and shouting dada excitedly when he came in. Oh and waving and saying 'hello' to the cashier at the supermarket today - I was so excited and so proud of her!

*spin not 'soon' in previous post!

I'm so sorry you are going through this I think in a way you are grieving. Try not to be to upset with your dh, some people always try to see the positive in any situation. You need to allow yourself time to cry, get angry etc. But try not to stay there to long, your beautiful dd needs your help to continue to improve. I wish you lots of love and luck.

OP - every LA has (by law) something called a Local Offer, which sets out everything it offers to children with SEN or disabilities (and their parents).
Local Offers aren't all the same - some LAs fund portage services as part of their LOs, some don't.
If you Google your LA's name and Local Offer, you should be able to find it. It's a good place to start, although inevitably it isn't straightforward to navigate.

Lots of Local Offer stuff is delivered through the LA's school system, but there is usually special early years intervention for children too young for school and this is usually delivered by Community Health (ie the NHS) working with Social Services. It might (depending on the LA's budget and the set up of the local NHS trust) include things like occupational therapy, physiotherapy, psychology, behavioural support, speech and language therapy, nutritional advice, portage, music therapy, child development paediatrics, audiology and sight check ups, respite care, and help with claiming disability benefits. You may also get assigned a child development social worker who is supposed to keep an eye on you and help you access support.

You should also check out your local Parent Partnership service which can give you more info on what to expect and what to ask for. www.parentpartnership.org.uk/
And here's the government's guide to SEN provision here - there's a section on early years in it www.gov.uk/government/publications/send-guide-for-parents-and-carers

As I said, keep an open mind about all this stuff - it's only by time and experimentation you will find out what intervention works for you and your daughter and what is just a PITA. However, when it first kicks off it's possible to feel quite overwhelmed with all the appointments and assessments they may throw at you, so try not to let it get out of hand. Say no to (for now) some things if you think it's getting all too much - most HCPs will be understanding.

I really hope that it all goes well - I have a strong hunch that things will turn out much better than your paediatrician thinks. They are not God, although some of them might disagree...!

Thanks Stickystick for your help, much appreciated.

I have been in touch with our early years intervention service and they are coming out to visit in a couple of weeks. I didn't realise how closely they worked with the playgroup my DD is going to in September which was great to hear. I rang the playgroup leader who said they could organise walking aids if she hasn't mastered it by then, 1 to 1 support and have a speech and language therapist come into the setting. I was really pleasantly surprised by all the support I can access, thanks to mumsnet for pointing me in the right direction!

My ds was significantly behind his peers at 2 (no diagnosis but not talking/ mobility not great etc) at 13 he is flourishing at a great school, top sets despite it being a selective school, plays rugby, cricket and hockey! I worried myself sick until he was about 6 when seemingly overnight (although in reality he was progressing every day) he just caught up!

Wow DarkHeart, that's incredible. Love stories like that, hopefully my DD will do the same!

Lady my DS didn't speak until nearly 3 and seemed to be away with the fairies most of the time. Happy, but kind of absent. Anyway - he's just signed up for his PhD so please don't worry too much. Some of them just do it when they're good and ready!

Thanks for the comment FarFromAnyRoad - I love hearing stories like that!

I don't really have much to add to the excellent posts above, but, if it's any consolation, I have a friend who was a late talker and didn't walk until well after two. He's now a successful partner in a well known law firm, fit, athletic and musically gifted. Some children do catch up.

Thanks WurheringTights. Good to know and remember when I'm wondering about her ever catching up. Today she said 'toast' and 'na-na' for banana and handed me my shoes when we were leaving a friend's house - I was so excited, she's never done anything like that before!

My middle child was talking in sentences at about 18 months.

She's now a distinctly average middle-set child at 8 .

Two is very young, and if you can target support at her as soon as, it's not at all necessarily a lifelong delay.

I had speech therapy at 4 because I hardly spoke. Am a Deputy Head of a large Secondary School now. DH wishes I stopped talking occasionally.

Thanks Saucy and Lulu. I am hopeful and she is making good progress with her speech and cognitive skills. I am worried as she is delayed in everything and with those delays and the constant drooling there could be something else going on. But I guess if speech can catch up then so can the gross and fine motor skills. I guess the last 2 posts show how early development can have absolutely no bearing on future abilities and that gives me some hope.

@LadyDowagerHatt hello, I hope this message finds you after over 5yeas but how is your dc doing now? Would love to hear from you as I’m in a similar situation

Hi @Sabu1234 I will PM you.

Another one here saying don't worry too much (but of course you absolutely will- we all do/did). Farfromanyriad made me smile as DS was really similar- and had physical quirkyness too (never really got to grips with riding a bike as a child, HV had concerns when he was tiny etc.). Now 19, at uni, doing fine. (And yes, there were days when he was little when I felt quite desolate- will he learn to talk/ live independently etc.). It's so, so hard when you're going through it, but my honest opinion is that a lot of children (and teenagers) just do things in their own time.

I am just filling in the blanks and constantly googling. I know I should be thankful that I still have the same beautiful happy little girl I have always had but I can't stop crying

Please please try to stop doing this. I'm sorry you're going through this..

My sister went on a googling rampage after doctors suggested her baby was behind..it started with looking at baby's hips and legs..then realised speech was delayed also...in the end(dont ask me how she got there) was crying at night convincing herself her child would grow up to be schizophrenic as shes read some medical paper linked the two. It's scary what your mind can run away with and google is the devil.

You're clearly so stressed and anxious googling will be making that much worse. If you can even do one thing...stop looking it up. Please.

Sister's child started walking and talking at around 2years and 4 months. It just happened. But by that time my sister was so stressed and worried about it,she couldn't stop there. She constantly checks the way in which child walks and corrects them too much when speaking..shes constantly anxious about the child now.like skes looking for somthing to be wrong. I'm not suggesting you will do this op! But anxiety can quickly take us down a dark path. Please nip this in the bud now....your child will progress at their own pace but you will no doubt be there to offer any extra help if needed.
Good luck op

@LadyDowagerHatt How is your DD doing now?

Mum to severely disabled boy.....no matter what diagnosis or named condition....they are still yours and you will do whatever it takes to ensure your child is happy and healthy.